Ukuba umntwana wakho uneDuchenne Muscular Dystrophy (DMD), oogqirha basenokuba bathethe ngesitofu sokugonya esibizwa ngokuba yiViltolarsen (igama lophawu: Viltepso). Kuqhelekile ukuba kuvele imibuzo eliwaka engqondweni ngexesha elinje. Loluphi uhlobo lonyango olu? Lusebenza ntoni ngokwenene? Yintoni esifanele siyixhalabele? Namhlanje, siza kuthetha ngayo yonke le nto ngolwimi olulula noluqondakala lula.
Kwenzeka ntoni ngokwenene ngale mithi?
Ngamafutshane, abantwana abaneDuchenne (DMD) banengxaki yemfuza ngokuveliswa kweproteni ebizwa ngokuba yi-'Dystrophin', ebalulekileyo ekugcineni izihlunu ziqinile. Eli yeza, elibizwa ngokuba yiViltolarsen, linceda umzimba ukuba uthathe indawo yeproteni engekhoyo. Ngamanye amazwi, eli yeza linceda ukugcina ukusebenza kwezihlunu ezithile.
Nangona kunjalo, kubalulekile ukuqonda ukuba olu asilonyango lwesi sifo. Kwakhona, eli yeza alinikwa bonke abantwana abane-DMD. Lifanele kuphela abantwana abane -gene mutation ethile . Oogqirha baya kugqiba ukuba olu nyango lufanelekile na kumntwana wakho emva kovavanyo.
Izinto ekufuneka uzixelele ugqirha ngaphambi kokuba unike umntwana wakho amayeza
Ngaphambi kokuba umntwana wakho aqale olu nyango, ngokuqinisekileyo kufuneka uxoxe ngale micimbi nogqirha wakho. Musa ukufihla nantoni na, kuba ukhuseleko lomntwana yeyona nto ibalulekileyo.
- Xelela umntwana wakho ukuba unesifo sezintso .
- Ukuba wakha waba ne-allergy kwiViltolarsen okanye nakweyiphi na enye iyeza, ukutya, okanye idayi, nceda ucacise oku.
- Kubaluleke kakhulu ukwazisa ugqirha ukuba umntu ofumana olu nyango usemncinci, uzama ukukhulelwa, ukukhulelwa, okanye ukuncancisa .
Ngokusekelwe kolu lwazi, ugqirha uya kuba nononophelo ngakumbi xa enyanga umntwana.
Indlela yokunika umntwana amayeza?
Le ayisiyopilisi oyithathayo okanye iyeza lasekhaya. Le yinaliti emthanjeni, okanye ngokuthe ngqo , inaliti emthanjeni . Njengokunika ityuwa, iimonki zinika umzimba eli yeza.
Olu nyango lwenziwa esibhedlele okanye ekliniki ngokupheleleyo, phantsi kweliso labasebenzi bezonyango abaqeqeshiweyo, ngoko ke akukho nto unokukhathazeka ngayo.
Yintoni omawuyenze ukuba uphoswe yintlanganiso yamayeza?
Ukuze olu nyango luphumelele, kubaluleke kakhulu ukuthatha umntwana uze umnike idosi kanye ngemihla namaxesha anikwe ngugqirha.. Ungaphoswa ziidosi. Ukuba awukwazi ukuya ngosuku olucwangcisiweyo ngenxa yengxakeko, fowunela ugqirha wakho ngoko nangoko ukuze umazise kwaye ufumane ingcebiso malunga nento omawuyenze ngokulandelayo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Oku kunikwa esibhedlele, ngoko ke amathuba okuba oku kwenzeke aphantsi kakhulu. Nangona kunjalo, ukuba ucinga ukuba usenokuba usele kakhulu, yiya kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele ngoko nangoko. Okanye utsalele umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ukuze ufumane ingcebiso.
Iziphumo ebezingalindelekanga ezinokubakho
Njengayo nayiphi na iyeza, iViltolarsen inokubangela ezinye iziphumo ebezingalindelekanga. Ezinye zezi zinokuba yingozi, ngoko ke kubalulekile ukuba uzazi.
| Uhlobo lwesiphumo esibi | Inkcazo kunye nento omawuyenze |
|---|---|
| Iimpawu ezinzulu ezifuna unyango olukhawulezileyo | |
| Iimpendulo ze-allergy | Ukuba ufumana iimpawu ezifana nokurhawuzelela eluswini, ukurhawuzelela okukhulu, ukudumba, ubunzima bokuphefumla, okanye ukudumba kobuso, imilebe, okanye ulwimi, yazisa ugqirha wakho ngoko nangoko. |
| Iimpawu zokulimala kwezintso | Ukuba ubona utshintsho kwinani lokuchama rhoqo okanye ubungakanani bokuchama, ubunzima bokuchama, okanye utshintsho kumbala womchamo wakho, yazisa ugqirha wakho ngoko nangoko. |
| Iimpawu eziqhele ukuba zimbi kakhulu, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Iziphumo ebezingalindelekanga ezincinci |
Ezi zifo zihlala ziphela kwiintsuku ezimbalwa, kodwa ukuba ziyaqhubeka okanye umntwana akakhululekanga, xelela ugqirha. |
Olu luhlu luquka kuphela ezinye zezona ziphumo zixhaphakileyo. Ukuba ubona into engaqhelekanga emntwaneni wakho, ungalibazisi ukuthetha nogqirha wakho ngayo.
Ngaba kukho naluphi na unxibelelwano olukhoyo namanye amayeza?
Ngokusekelwe kuvavanyo lwangoku, akukho ngxelo zikhoyo zamanye amayeza asebenzisana nogonyo lweViltolarsen.
Nangona kunjalo, kungcono ukunika ugqirha wakho uluhlu olupheleleyo lwazo zonke ezinye iziyobisi umntwana wakho azisebenzisayo (amayeza ezinye izifo, iivithamini, amayeza esintu, izongezo zokutya). Oku kuya kunceda ukuthintela iingxaki ezingeyomfuneko ukuba zenzeke.
Umyalezo Wokuya Ekhaya
- I-Viltolarsen liyeza elinceda ukulawula imeko ye-Duchenne muscular dystrophy (DMD), kodwa ayilonyango olupheleleyo .
- Eli yeza linikwa kuphela izigulana ezine -genetic change ethile .
- Le yinaliti efakwa emthanjeni, kwaye inikwa kuphela ngabasebenzi bezonyango abaqeqeshiweyo esibhedlele okanye eklinikhi .
- Ukuba umntwana wakho unesifo sezintso okanye ezinye izinto ezibangela ukuba angabi namdla , qiniseka ukuba uxelele ugqirha ngaphambi kokuba aqale unyango.
- Ukuba ufumana naziphi na iziphumo ebezingalindelekanga ezinje ngokudumba kobuso, ubunzima bokuphefumla, okanye utshintsho kubungakanani bomchamo , funa ingcebiso kagqirha ngoko nangoko .
- Kubaluleke kakhulu ukuthatha iidosi zakho ngexesha, kwaye ungoyiki ukubuza ugqirha wakho nayiphi na imibuzo onokuba nayo.
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